As you might suspect, traveling after stroke is not easy. Actually it’s pretty tough.

Day one

Airports are overwhelming like supermarket before Christmas. Even healthy people can get confused, for stroke survivor it’s just too much.

So many little things happened. For example i bought newest Harry Potter in German, not English. You know, ich spreche Deutch ein wenig, I speak German a bit, but by the way I would gladly sell it. Anyone? Gelegenheit! Great deal! Okazja! Promoción!.

Or I was standing for few minutes in front of the sign saying „ausgang/exit” and I still had no idea how to get out from airport… Luckily my driver (yes!) was a patient person and took me to the hotel. Where i had room reserved, for a bad surname;p but it’s ok, I’m a hero and I sorted everything out and I could take show, see welcoming me Haribo gummy bears, get dressed, buy coke zero, drink a coffee and go to dinner to meet everyone:)

I was regretting I had been after long trip and not in the best shape because of that. Really. And I hope that i didn’t behave like a complete churl or bighead, I’m afraid that i might have.

The funniest point of the meeting was this general welcoming. Chit-chatand

The dinner was very nice. I met few members-ambassadors a bit better and I have to admit that we all seemed tired.

We spoke about life, strokes, our experiences, prostitution in Germany. It was e

Extremely nice, but I must admit that I felt relieved when we could excuse ourselves and jump into the bed, without even cleaning face.

I promise to give you insight into stroke-realted things we discussed, but I simply don’t want them to dissapear in the other things. Each issue-one article. Deal? 😉 But now I just have to announce my new goals. a) visit water bar in Munich (they have different kinds of water;p It might be alternative for my „un cervesa, por favor”) b) visit Weihnmachtsmart on a frozen lake in Hamburg. It will be perfect place to drink my Gluhwein (hot wine). If I break all the bones and die, at least I die laughing;P

During the night I found out my king-size bed is actually two smaller-size beds. I found it quite suddenly, while being partly on the ground. But! on the bright side I didn’t kicked bedsheet of my bed, mom would be proud.

Company Merz, which is one of the fundaments of the project, is the producer of botulinum toxim of the new generation. That’s a first thing. It’s also intrested in CSR I guess, and it came intxo cooperation with SAFE (Stroke Alliance for Europe). They decided, as we say in Polish, to join pleasurable and useful 😀 and take care of spasticity in a more complex way.

I mean. Merz representatives looked quite confident while talking about their research (very interesting) and their belief that this project actually can help in a problem of spasticity. They convinced me that it’s not (only) about selling their product (which would be sold anyway;p) but doing a good thing from which more than 9 members of panel can benefit.

For me the most interesting thing were results of their research on spasticity. These were shocking and easy to believe at the same time to tell the truth. It was like confirmation of my intuitive believes on spasticity. In a great shortcut I’m presenting the most interesting for me information. I will write more on these in separate notes as each and every of them deserves to get my full attention. Well then:

many of people suffering from spasticity don’t even know the term „spasticity”. How they can search for relieve then?;)

Botulinum therapy can be satisfying for some reasons and disappointing for others.

Many patients never heard about spasticity from their doctors.

Main barriers in the access to botilinum therapy are bureaucracy and not enough amount of injection devices.

And you know, despite having a feeling that I’m from the third world of stroke treatment, I see that we all have same problems all over Europe. Every country is lacking the individual approach in therapy and towards a patient. Like everywhere people after strokes could be pampered more;)

I’ve felt a bit weird when one of the company representatives asked me why I haven’t tried therapy with botulinum. I answered, but if it had sense, I still have no clue:D… I don’t really know. The truth is that I don’t know too much about botilinum therapy.

If you are afraid that the project will be like advert of the pharmaceutical company, don’t be anymore. Actually I felt the same way until I realized that both campaign/website and botulinum therapy are well indefied as the means to a happy end. In the end we will get a nice and well adjusted source of knowledge about spasticity, useful for many people (including strokies of course) and helpful. And it will be translated to few languages, including my lovely Polish;) And if Merz doesn’t do that i will make them remember, that i have only one fist and leg spastic, other can fight for our right;P

It seems that knowledge about spasticity has to be distributed in many ways as even doctors are not well informed about it. Even they could use some more knowledge. I’m very happy to be a part of the project and not only because I had amazing food there:P

I’m extremely tired. 2 days of an intensive trip&working on project, then 2,5 od writing, translating, but… I’m the best faker (I fake my physical well-being extremely well;p), so hopefully noone knew that I want to sleep in every place I’m in:)

Enough of it. You deserved a short photo relation.

This is what I saw in Frankfurt:

surname with some typos, but still nice:D

And these things I dint…

You know what I mean;) And I hope these photos are from Frankfurt am Main:) Ehhh… It’s been long time of writing. Now bit of the rest. I really really really really really really need this:)

As I was telling everyone on my Polish blog… We re going to inaugurate there one project regarding spasticity. To tell the truth I have no idea how it is going to look exactly, but I really hope that main beneficiaries will be you, not the sponsor;p

Imagine that suddenly you loose power over your body. That you lie in the bed and want to scratch head and you can’t. Even though your hand doesn’t really hurt, you can’t move it more than few cm. As if someone drugged you.

Imagine that you drive your car talking to a friend sitting next to you and suddenly, in one second, your words become mumbling, and when you try to change the gear, it doesn’t feel like your hand, it’s more like log of wood hitting on something. Imagine that after falling down and you can’t get up because you have no power in your leg and hand.

If you think that you can imagine that, you’ve never been more mistaken in your life. My hemi-paresis (of left side) after brain stroke was (and still is) the most awkward I’ve ever experienced, you kind of can move your limbs, but not in a way you want. And they are so weak that you sometimes wish that you didn’t have the them at all.

So many stroke survivors struggle with hemi-paresis. It’s quite different from paralysis, but I guess equally frustrating. It’s a state of „in between”, you kind of can, but really can’t. Your brain can’t guide your hand or leg or only fingers.

When paresis hits you the lack of power over your body is just weird, you notice formerly unnoticeable things. Me myself I feel it as if a bunch of puppeteers sat in my body and pulled strings just to make my moves more difficult.

At some point it’s easy to give up and give all power to the puppeteers. To give up working out, your physiotherapy, but one must cut the strings by working out. I still have problems with my palm and I work out. Time passes and it’s still frustrating, but it’s not worth giving up.

Our caring government, or National Insurance Company took care of people like me and we got increase on our monthly payment.

Me myself i got

1,92 PLN

which gives me about

0,44 EUR, 0,59 USD, or 0,36 GBP

more of monthly income.

I can spend it in plenty of ways! For instance:

buy 6 bread rolls in a discount market,
buy 3-4 bread rolls in bakery
buy one cigarette (illegally, but still possible)
use 200 l more of tap water
Buy half price ticket for bus in my city for 15 min,
Buy half price ticket for Warsawian bus for 20 min,
buy one lemon in the beginning of the season
buy 3 pencils with a rubber
buy a donut
buy two zucchinis in the season for zucchinis
buy sesame cookies
change it to 192 coins and throw them to every fountain thinking wish of winning big money lottery
send few (even more) complaining texts to friends
Buy two cheap instant soups
Buy one normal instant soup
buy Ikea hot-dog
Buy the cheapest beer in Poland
Buy one kilo of potatoes
Buy one issue of famous Polish tabloid
buy a lighter
buy a roll of toilet paper
But if I’m patient enough I can save this money for a year and buy:

We hear it always and everywhere. Drink water, drink water, drink water, at least 1,5 l a day, drink water, drink water to stay fit and healthy, drink water, drink water, drink water to get rid of toxins, drink water…. Yeah, for me it’s also boring. I don’t even like water, I feel as if it was for horses and preferably I would drink only juices (all that sugar, blah!), coffee with milk (dehydrating, awful!) and Coke zero (blah, just awful, blah!).

The thing is YOUR BRAIN NEEDS MUCH WATER TO REGENERATE AND REBUILD.

When (finally) my doctors said that they can take me off the drip-bags I had to promise them to rink at least 1,5 l of water plus fluids given for meals. That was much more than 2 liters, I could even drink more! Without it recovery would be more difficult, cause our neurons need it. Really!

Still I try to remember about it, but I’m only human and I tend to forget about important things. When I realize that I haven’t drunken enough I just go to the kitchen and drink big glass of tap water, without bothering myself with lemon, mint and so on…

Of course, hydrating yourself is important for bunch of reasons, but only problems of my brain could convince me that ‚horse drink’ (as we used to call it) is worth putting on my diet. For me there is no question whether the glass if half full or half empty anymore. It should be empty. And empty. And again empty.

– no, I was older – I would to reply that way for every single comment of this kind.

I find this question stupid. I really don’t know how to respond. I found some ways to handle it.

To say „yes” and add one of my hospital stories, is one of them. It shows others that I really been trough a lot but I’m handling. Usually I also add the most likely cause of my stroke, not to give others reason to whisper behind my back about a fat girl who smoked too much…

Not that I care too much, but a bit I do. You should know that brain stroke is rather an illness of eldery (age is main risk factor, sorry), but it can hit anyone, anytime. In one of the British sites on strokes I read that one in four people suffering is in working age or younger, even small children. Hey, 1 in 4, 25% of us, that’s a huge amount!

And still more and more young people suffer from it. Doctors suspect that we should blame our lifestyle. On the other hand half of a year ago I read an interview with neurologist who said that average age of having a stroke is growing, but media is collecting our attention for young people. I’m not sure which info is true, in the end these don’t have to exclude each other;)

Yes, I’m the unlucky one to be young survivor, I was 25 when it happened. I know that it will make my life difficult for years. But I feel special, in a way;) Personally I know only two survivors under 30, and over 60 – tens…. In this unlucky thing there is some luck: my brain plasticity is still huge, so my „brainholes” can be replaed veeeeery soon. I just have to work on it as hard as possible. And I do:)

Why just after brain stroke you don’t work out 10 hours a day non-stop?

Why your physioterapist cares always is sure that you have a chair next to you?

Because rehabilitation is not a gym. It’s not trainihng for marathon. And your healt is the most important. Your physiotherapist know that you have to rest even if you don’t feel tired. Overtraining yourself can be damaging, and consequences might be worse than simple muscle pain.

My Mrs. Magda was always watching me closely when I was doing my workouts. I would always hear „and did you take a break? Too short!”.

I „overworked” myself few times. Once, when I had visitors in hospital and was doing my manual exercises with beans for more than two hours without any breaks. Then, for few days I had problems with using my hand „normally”. It was too tires. Opening it was a great challenge, and before I hadn’t had problems with it! I felt just weird.

Another time was also on manual exercises. I learn’t to knit after stroke and suddenly I told everyone that I would make them a scarf. Great! Was doing them days and nights. And it made my hand stiff, not to say a bit spastic… The damage was done. I’m sure it was not only due to knitting, but for sure also…. Remember, when you work out, take breaks! Take rest, sit down, put your hand on a table. Don’t overwork, don’t listen to your dad saying „let’s do it 50 times more”.

Physiotherapists have a dreadful task of judging whether moaning patient should really take a break or is just lazy. Don’t be lazy, but don’t overwork yourself. The process of recovery takes time and effort, it’s not worth to spoil it with too much training.

P.S.

Even professional athletes can be overtrained. Really. Resting is important part of most of activities, not only in rehabilitation. Believe me(;

Well, it should be clean and locked. It should give us feeling of intimacy and comfort.

I think my stroke took it these from me forever. It happened in a locked bathroom. Of course I tried to stand up, but all I achieved was hitting my head several times. I think I passed out for a moment, I remember some parts of rescue mission, but not much.

I know that suddenly safe place became something what brings back memories of „almostlosing” life. I have no fear in full meaning of the word, but every single time I come into to bathroom I see myself luriching left, falling down and hitting the wall with my head. For a second i watch the wall to realize that I’m now and here, not then and there, and I’m safe now.

I handle it pretty well, I don’t get paralized. But it’s there every single time, like a shadow over every toilet I go.

Ending „institutionalized” rehabilitation in hospital is always the big test. Will I still workout for my better future? Will I continue with good piece advice of physiotherapists? For most of people I know enthusiasm ends within two weeks.

To tell the truth among tens of people I spoke to during my hospital times only one person admitted that she’s been actually exercising almost every day for last 20 years. This incredible lady has SM and she is moving with just one cane. I admire her so much for being so smart and dedicated to her health. For me she is a person to look up to.

Well I’m not that strong. I’m hardworking, BUT lazy (I know how it sounds, but believe me, it’s more than possible). And that’s why I made for myself something I call „my plan of minimum”. This is a rehabilitation plan which I have to do even if i feel like laziest person ever.

It’s like „must do”, even while being superbusy, superlazy, during the travel, I have to do it.

For now it goes like this:

manual exercises 15 minutes (you can do it everywhere)
one logical game
exercises of face
reading (preferably aloud, but silent reading of difficult text will also do)
language game or languge learning (it’s about improving my speaking skills and vocabulary)

Most of these you can do during other activities (if you can do two at the time). Doing such „plan of minimum” doesn’t let you feel as someone who just doesn’t care about himself.

For me this plan change every few months, and to tell the truth there were months during which I did only this, I felt so bad that my minimum was maximum at the same time.

It’s easy to give up fighting for your health and once you stop for some time it’s very hard to go back to routine. If there is something like this it’s easier for me not to give up…